Sunday, March 10, 2013

For some reason I have had a bit of problem writing about this milestone. There is so much I feel but somehow its not flowing when I write. But..... here goes. I am going to give it a try.

6th March was the seven year mark from the day that we officially heard what Steven's diagnosis was. For a couple of weeks before that, we knew that something was terribly wrong, that it was some kind of cancer, but did not know which one.

I remember so well being absolutely terrified. Leukemia to me was a death sentence. My maternal grandmother had died from it and in the world I lived in there, anyone who had it, had limited time.

I remember ripping apart a rose bush with my bare hands, I remember so well that day at the hospital not knowing how to be, how to work with this and what on earth to say to my kid! I wondered how to even think that my eldest was going to die, let alone talk to him about it.

But here we are 7 years and 4 days later, with great PCR test results, a young man doing very well and getting on with his life. How grateful am I? Sheesh - there is no number to quantify that. I am grateful way beyond any possible measure and always will be.

Just last week there was an article about Adrian from the UK who, before he died, made an incredible effort to change things in the UK so that more people would get on the Bone Marrow Registry. Click here to read the article. This young man really did change how a very important part of the world works - he changed things on a big scale as well as in each and every one of us who were in contact with him or read his story.

When I saw Adrian's photo in this article, the tears flowed freely. I am so sad that he no longer here, that he died, that his parents and family and friends will always have a hole in their lives. And there are so many more that have not responded well to treatment as Steven is. And my insides just quake at the thought that it could so easily be me that only had the photos of my kid to look at.

It was interesting this past weekend when I did a photo-shoot of a wedding that Steven and Laura were part of the ceremony. I found my camera hunting them both down, especially the times when they stood together, when the smiles flowed or the gentleness between them showed...... the times when the proof was right there in my face that life was normal for him. It was good.

Editing the photos came with some sniffles. I wanted to text them both so many times to tell them how grateful I am, how highly I think of both of them and ........... Well, I want to somehow convey how incredibly glad I am that Steven is not only responding well, but that he takes this disease so seriously, that he takes his meds properly, that Laura is so supportive and keeps life normal, that they are moving with their lives despite the cancer. I want to tell them that, but I did not. Its as if I would be injecting cancer into a part of their life that it does not deserve to be.

I sincerely hope that huge swaths of their lives are totally free of even the thought of this leukemia and even sometimes feel as if I am silly for holding on to my thoughts and sometimes fears, despite the obvious fact that they are doing so well in dealing with it.

And so..... 7 years. Its come around so fast and yet it really has been a whole lifetime for me. My life is definitely divided into before and after cancer times.

Its been an incredible 7 years dealing with CML, not much of it easy, not much of it relaxed but like a fine wine maturing over time. Again, I am only talking about my feelings, I cannot talk for how it was and is for Steven.

The absolutely most important thing that helped me through these years, was the support groups I joined soon after his diagnosis and others that emailed and called me. Without everyone that walked the walk with me, people I met and never will, I could not have done this. So if you are one of them and are reading this - THANK YOU!

These days I don't get as uptight any more around test time and the last one I even forgot about! It's become part of life, part of the routine of what needs to get done. Again, just how can one measure how grateful I am for this........?

Immeasurably grateful.

And now on to the next 7 and the next and the next and the next...

Steven and Laura - I am so grateful for both of you for the way you deal with this CML... I am so grateful that you share it with me and love you both tremendously.

Sunday, February 10, 2013

And so the days and weeks tick tocked by and I was surprised at how 'normal' this waiting has become. I find my mind touching on CML every now and again, and as the test result time comes closer, I look for reasons that it might be higher again this time.

But no - this time it was, once again, a WEAK POSITIVE! Another rainbow in our lives :)

Yeah!

And so now we go back into the 'cruising time' with no tests looming, no results - at least not for another month or two.

After close to 7 years since Steven was diagnosed, I am truly grateful to be in this place that is un-freaky, this almost normal stage and hope with all my heart that it keeps on like this.

Life

About Me

This blog is from my point of
view as a mom with an adult
child who has cancer.
In no way do I mean to take away
from what he, or anyone else is
going through. These are purely
my thoughts and feelings at the
time of writing and in no way
suggest treatment options nor do
they offer advice in any way.
This is my way of strengthening
myself, which in turn will
strengthen Steven too.